Melissa’s husband, John, had global aphasia after his strokes. She found the lack of resources and information frustrating, but focuses on moving forward and keeping John motivated.
John had two strokes, the first stroke completely out of the blue, there were no risk factors there for him at all, but they caught it right away. He got the Tpa drug, it was a non-event. Exactly a week later, he had a massive stroke and his left carotid had a dissection and had completely occluded. So that was a very life threatening stroke. His life was only saved because he got into surgery within the hour.
John was president of a large seafood company in Seattle. He was a workaholic, so he worked a lot. But in his spare time he liked to work on his Jeep, he collects watches, he likes to do anything mechanical. He was a World War II history buff, so he would do a lot of reading about that, and research. We traveled a lot. Life was pretty active.
We left the hospital, because he was only in inpatient for one week. I don’t think they really knew what to do with him since physically he was fine. He just couldn’t say anything. So after a week, they were like “You can deal with this at home and good luck!”
I couldn’t believe it. It’s like “Here’s a pamphlet. Here’s what aphasia is. We know you’ve never heard of it, but that’s what it is”
The neurologists were good because they said ‘the brain is amazing. We only know 20% about the brain. We don’t know for certain what he is capable of returning to. So you just have to keep working his brain and stimulating his brain and keep trying’.
But the reality is, when we got to the outpatient side even just trying to schedule speech therapists and find therapists out there who dealt specifically with aphasia was a challenge. There was a huge learning curve for me, just trying to get those pieces together to try to get him therapy. And there was no help.
Even in the hospital, I was just on the internet all the time. Where can I go? What can I do? Actually, that’s how I found The Aphasia Center, because I ordered one of your cards while we were still in the neuro side of the hospital. it was one of the first resources I found . I was like ‘oh look, they have a newsletter, they have a blog, and they’re really talking about this’. But locally? No. I never really found anything locally.
It’s hard to say where to start, your life has been up-ended. For us, personally, maybe on some levels it was easier for us. We don’t have children, we live in the city of Seattle, so getting to appointments or doing things was relatively easy. But on the flip side of that, I had no idea if John would ever return to work. I didn’t know where to begin to even tell people. If I didn’t understand what Aphasia was, how do I explain to his boss? How do I explain to family members? People looked at it as if it’s a learning disability. In that, oh, well once you learn this you’ll just move on. Like you’re teaching a child. But that’s not how it works. Everything was so unknown. It was overwhelming. But I never said it was hard because we were lucky that John was alive and that physically it could have been much worse.
I think the biggest thing is to keep John’s spirits up. Right before we came here he was very low. He’s a very hard worker, he’s very diligent. He worked so hard in Seattle but it was like he was spinning his wheels the whole time. Yes, he made progress, but it was so slow.
He got to the point where was like “This is it. I’m never going to get any better. What am I ever going to do with myself? “ Now he is much better, his spirits are up and to go home and keep that momentum going is my biggest concern. Like, “no, look what you’ve done, look how good you’re doing now” and keep the ball rolling. Don’t get home and kind of flounder around, I want to keep moving.
Keep around people that are positive and understand the drive to keep moving forward and hope. Because you will run into people that are either going to say things that are negative or that think you’re wasting your time or wasting John’s time. And I think you just have to cut that out of your life. You always have to live with the positive, hopeful, forward motion.